Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: SjoGirl on December 18, 2018, 12:39:26 PM

Title: Pancytopenia, pain, agggg it's all back!!!!!
Post by: SjoGirl on December 18, 2018, 12:39:26 PM
Oh I was so good, so pain-free, so happy. Now for some reason my pancytopenia is back. This was discovered because I went in for an EKG because I felt like I had an episode where my heart stopped then started racing. Seemed like a heart event if not a heart attack.

EKG was fine, but the PA ran blood work which showed many of my blood markers are out of whack. As well I'm suffering from very severe fatigue, undoubtedly from the anemia which I am experiencing.

I also chose to take medication vacation from Gapabatin because I was twitching too much at night (a short respite tends to lessen that issue). Today my neck feels like it was used as the washer in a wringer washer. I had so hoped that the Celebrex that my rheumy gave me would take care of the neck pain, I suppose I will end up back on Gabapentin.

I am grateful for the pain-free time that I had and hope for more such days, though I realize that such days will only come thanks to medication. Sigh.

Thank you for listening.

Title: Re: Pancytopenia, pain, agggg it's all back!!!!!
Post by: Carolina on December 19, 2018, 06:24:54 AM
Dear Sjogirl,

I'm sorry you are experiencing the recurrence of pain, and of your serious pancytopenia.

I had to look up pancytopenia:

Pancytopenia occurs when a person has a decrease in all three blood cell types. This happens when something is wrong with the bone marrow, where blood cells are formed.

Pancytopenia sounds scary, SjoGirl.  I hope you have ways to manage it.

I take 4800 mg/day of Gabapentin for the pain of my Small Fiber Neuropathy.  But it doesn't help the pain of my osteoarthritis, unfortunately.

Pain has a world of its own.  I'm currently dealing with an unusually high pain level (for me) that is chronic.  I think I have to talk again with my pain management doctor at Duke.

And I have to consider again having surgery on my cervical spine, which is the cause of most of my pain.

Thanks for keeping us posted, even when the news isn't good.

Hugs,  Elaine

Title: Re: Pancytopenia, pain, agggg it's all back!!!!!
Post by: SjoGirl on December 19, 2018, 09:49:21 AM

Thanks for your kind note. I'm still waiting to hear from my rheumatologist about the pancytopenia. I've had this before from one of two causes, disease or meds. I anticipate that we'll have to figure out which is which this time.

What's weird is that I was fine last time I had blood work, this took a turn within just a couple of months. I have been running myself ragged and it may be that this is the result. It is forcing me to slow down and relax. Fortunately, it's winter break where I work so I can work fewer hours and at a slower pace. Also, my consulting business is in a slow time as well, amen.

Fortunately Ben Gay dealt with the pain, which was more muscular so Gabapentin would not have helped anyway. Just going to take things one day at a time.

So sorry to hear about your issues with pain. I had months without any and forgot how very miserable chronic pain can make a person. I wish you the best holidays possible.